Welcome!

 

We have several new people who have joined our group, so I thought perhaps we could do a little roll call?

 

I'll start, since I started this list several years ago.  It was actually intended to be a way for a small group of us Yakima people to communicate, since our monthly meetings were proving to be more difficult to attend.  As it turns out, there is very little online support is Washington, so several people have joined our list and it has grown.  All who are affected by epilepsy are welcome!

 

I have a daughter (Chelsi) who just turned 14 last week.  She's had grand mal seizures since she was 10 months old.  They started out to be febrile seizures, and progressed to appear whenever she would play too hard or get overheated in anyway.  That's sort of progressed to having them for no rhyme or reason....which is where we are today.  She currently takes Zonegran, Keppra, and more recently Diamox.  We probably average 2 seizures per month (though I'm happy to report we've almost made it 2 months w/o one, since the Diamox was added....knock on wood!)

 

Chelsi's a beautiful 7th grader who struggles at school. With the help of an IEP, my goal is to get her graduated from High School.  She's very bright in some areas and way below grade level in others.  She's got quite an attitude on her sometimes, and I wonder how much of it is her/being 14/being on 3 mood altering drugs. 

 

My biggest struggle (and I'm looking for suggestions, here!) is figuring out what to do with her this summer.  Because of her seizures, she's never alone.  I pay a girlfriend of here's every month to let her go home from school with her.  I get very little help from my mom or my 2 sisters.  My mom doesn't like being alone with her.  She is very paranoid and afraid that Chelsi is going to have a seizure in her care and she can not handle it.  I'm looking into her helping our in an in-home daycare as a helper, but my little girl in the most introverted person I've ever met and she often doesn't understand directions, so I don't know how much help she will really be.  On the other hand, about 8 of her 10 last seizures, she's basically been alone...I mean she had the seizure (either in bed, in the bathroom while getting ready, on the computer) and we didn't discover her until it was over and she was sound asleep), so is leaving her alone such a bad thing??? I know it is, but I'm wondering what other parents do, or how you, as an adult with epilepsy know about being alone?

 

Anyway, that's where we are for now.  I've read all the stories of those who have recently joined and look forward to chatting with you....but I'd like to hear who all is on this list and perhaps we can liven this up a bit?!

 

Sue

Yakima